Tag: Assisted Dying

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Crofton couple chooses doctor-assisted death: “Kay and I have lived a rich and full life. All is now in order, and we’re ready to move on.”

Crofton’s Ernie Sievewright and wife Kay (in picture) died with the assistance of a doctor.

by  Robert Barron

Surrounded by his many friends and loved ones, Ernie Sievewright finally died with dignity in his Crofton home on Jan. 15.

After wading his way through a long bureaucratic process that began late last spring, the wheelchair-bound senior from Crofton was finally allowed to legally commit suicide with the assistance of a physician on Sunday under Canada’s new Medical Aid in Dying legislation, which became law in June.

His death follows the physician-assisted suicide in their home on Jan. 11 of his beloved wife Kay.

Kay had been suffering for some time from complications of multiple sclerosis and other medical issues at a nursing home in Duncan.

That makes Ernie and Kay among the first couples to successfully access doctor-assisted suicide in Canada since the Supreme Court of Canada voted unanimously to strike down the federal prohibition against it in Bill C-14.

Bill C-14 restricts physician-assisted deaths to mentally competent adults who have a serious and incurable illness, disease or disability.

Sievewright suffered from cauda equina syndrome, a serious neurological condition that causes loss of function of nerve roots along the spinal cord.

Before his death, Sievewright said the quality of life he and Kay had was continuing to deteriorate rapidly, so they decided that death was preferable.

“It was very difficult for me to see Kay in pain all the time, and I live at home alone in a wheelchair dealing with the pain of my own illness and counting on friends to come by and pick me up when I fall,” he said.

“There’s no value in our lives anymore, so we had to ask ourselves what was the point of sticking around. We didn’t want to minimize our decision, but it was well thought out and we had discussions with friends and family. We all agreed that this was the best for both of us.”

But the approval process was long, and both had to meet with countless doctors and other specialists for their assessment and approval, so it took many months before they were finally given the green light.

Both died quickly and painlessly by lethal injections delivered by a doctor.

Sievewright invited the Cowichan Valley Citizen to his home just 36 hours before his scheduled death.

It was the happiest this reporter had seen him in the four months since I first met the Irishman with his infectious grin.

During that encounter in October, Sievewright was frustrated with all the meetings and consultations with doctors and delays he and Kay were facing in the process.

All that was in the past in the hours after he held Kay’s hands on Jan. 11 while the lethal injection was being administered to her.

“I feel really, really good,” he said at his kitchen table while friends looked on.

“I was a little upset that we couldn’t go together, but now I’m glad that Kay went first and I was with her at the time. She went so peaceful and beautifully and it was a great relief for me to see that. I’m not frightened now of my own death.”

Sievewright said he still wished the process could have been easier and quicker, but all the doctors and medical officials he and Kay dealt with were very kind, and did the best they could for the couple under the new law.

Dr. David Robertson is the co-chairman of Dying with Dignity Canada’s physicians advisory council.

He said there are no day-to-day records of exactly how many people have died through doctor-assisted suicides across Canada since Bill C-14 was legislated in June.

But Robertson said it’s been estimated that approximately three doctor-assisted deaths have been occurring a week on Vancouver Island for the last six months.

“I think the numbers across Canada are steadily increasing, particularly on the Island which has a long history of activism on this issue,” he said.

Robertson said it’s a fact that some doctors and nurses have personal views and are reluctant to participate in doctor-assisted deaths, “but many others are very willing”.

He said there are currently only 12 physicians on the Island who have taken the required training to perform the deaths, and many more are in the process of completing the education.

But Robertson said the numbers of medical staff who have the training and expertise have little to do with the amount of time it takes for people to make their way through the medical bureaucracy.

“We have the same requirements in B.C. as the rest of the country, and there are numerous documents and forms to be filled out and steps that have to be taken,” he said.

“There are very high standards to fit the criteria, so this is no simple process. It’s not a decision that patients or the medical community take lightly. We’ll continue to monitor physician-assisted suicides across the Island and the country and develop the process as we go to better fit the needs out there.”

As for Sievewright, he was just happy to finally get to the end of his long journey.

“Kay said she’d have the boat in the water with a full bait bucket and at least one dog on board waiting for me when I get there, and we’ll go fishing on flat and calm seas,” he said with a smile.

“I’m hoping that this really happens because it would be fantastic. Kay and I have lived a rich and full life. All is now in order, and we’re ready to move on.”

Complete Article HERE!

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The final chapter

A look at the obstacles of a physician-assisted death in Canada

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[K]ay Carter had been suffering from spinal stenosis for years and knew she was going to become debilitated before she would die. Rather than wait until she was no longer in possession of her own body, the 89-year-old chose to die on her own terms. She left this world peacefully at the hands of a Swiss palliative care physician with her loved ones by her side.

Physician-assisted suicide was not legal in Canada at the time of Carter’s death, and as her condition worsened she knew she would lose the capacity to consent to have a physician assist her, so she travelled to Switzerland while she was still able-bodied.

“She had a premature assisted death because she couldn’t get one here in Canada,” explained Michael Begg, a professor of legal studies at Capilano University. “Some would say that the criminal prohibition killed Kay Carter, since it forced her to die years early.”

Carter’s story made up the framework for the legal case, Carter v. Canada, which over a five-year period would challenge the Harper government to reform the assisted suicide law in the Supreme Court of Canada. Carter was able to die on her own terms, but many before her had been denied that right, and their stories date as far back as Canada’s founding.

She received death threats and found herself having to wear a bulletproof vest into the clinic where she work … Many abortion doctors who ultimately quit practicing did so because of threats or attacks made against themselves or their families.

The Criminal Code of Canada was written in 1892 according to the moral guidelines of Victorian society. Protestant Christian worldview shaped legislature, and both suicide and assisted suicide were outlawed. The taking of one’s own life was an unforgivable sin, and those who were found guilty of it could not be buried in consecrated ground or ever hope to gain access to heaven.

In 1972, the law prohibiting suicide was repealed. The right to refuse life-saving medical treatment or intervention was also introduced, giving people more autonomy over their health care. Assisted suicide was still illegal, classified as murder for which physicians could receive a prison sentence of up to 14 years, but support was growing with newfound understanding of detrimental ailments that were prolonging people’s suffering well beyond what they were willing or able to cope with.

In 1993, ALS patient Sue Rodriguez appealed for the right to die with a physician’s assistance. She argued that in not being allowed to seek help, the law circumvented section seven of the Charter of Rights and Freedoms, which guarantees any individual rights to life, liberty and security of person.

“The government can violate a Charter right – but only where the courts find the violation is ‘justifiable’,” said Begg. People recognized that in denying Rodriguez the right to die, her personal autonomy was stripped away and in essence, the government claimed ownership of her body. The Supreme Court ruled that the state of the law was justifiable. “In 1993 there was a fear of potential abuse,” Begg continued, but the fear displayed by the courts was unfounded, because at the time there was no evidence to prove that the practice of euthanasia would go down a slippery slope. Rodriguez ultimately took her own life with the assistance of an anonymous physician.

“The political parties had no will to change the law to allow assisted dying because it was such a political hot potato. Most Canadians didn’t have a strong opinion on it, liberals and conservatives were not eager to take proactive steps to change the law,” said Begg. Carter’s family challenged the law again in 2011. In the time since Rodriguez had gone to court, Oregon, Belgium, Luxembourg and the Netherlands had legalized assisted suicide and set up regimes to carefully monitor assisted death and ensure that the practice was not being abused. The Canadian courts saw this and overturned the previous ruling, legalizing assisted suicide on Feb. 6, 2015.

Legalizing assisted suicide couldn’t be achieved overnight however, so the Supreme Court suspended the law for one year so regulations could be drafted. The Harper government put off writing the bill until Justin Trudeau entered office in Nov. 2015, and the Liberal government was hard pressed to draft euthanasia proceedings in time for the Feb. 6 deadline. The bill was further extended, and on June 6, 2016 formally became law, with regulations introduced on June 17.

“This is a legal right that Canadians have but if you don’t have a provider, you don’t have access, then you can’t exercise your right,” said Dr. Ellen Wiebe, a former full-service family doctor who specializes in women’s health and end of life treatment. “When I discovered that the palliative care physicians, who normally would be doing the end of life care would not…have anything to do with assisted death, then I realized that there would be a need for providers and that I could be one.”

As one of few doctors who provide abortion services and euthanasia, Wiebe has risked her life to tend to patients. Those who she has treated have been extraordinarily grateful for her services, she explained, but certainly there have been others who have frowned upon her work.

In 1994, an anti-abortion terrorist shot her colleague, Gary Romalis. The attack put Dr. Wiebe at risk since she was known publicly. She received death threats and found herself having to wear a bulletproof vest into the clinic where she worked. Her young son was terrified, and it was his fear that caused her to wonder if her work was putting her children at risk. Many abortion doctors who ultimately quit practicing did so because of threats or attacks made against themselves or their families.

Saddened that the stigma surrounding abortion never subsided as she had hoped, Wiebe pressed on and ultimately began performing end of life care for the same reasons she had when she began performing abortions. Wiebe was determined to provide a service that few others would because it was so steeped in stigma. She calls herself an activist for complete bodily autonomy.

Following the outcome of Carter v. Canada, Wiebe had one year to learn all of the skills she would need to administer euthanasia treatment. She travelled to the Netherlands and studied under doctors who had been practicing euthanasia for years. In Canada she set up a support group where doctors could learn and support each other in preparation for June 6 when the ruling became law.

Though she has observed far greater support in Canada for the right to die since then, Wiebe knows that controversy will linger for years to come. “The support is certainly solid, but there’s still lots of people who disagree,” she said, “and that will always continue, I think, because in the Netherlands where they’ve had decades of legal euthanasia they still have people who are against it.”

There are several activist groups in Canada currently speaking out against assisted suicide, including the Quebec-based Physicians’ Alliance Against Euthanasia. The coalition has spoken out against assisted suicide on the basis that intentionally ending life is a complete contradiction of the goals of practicing medicine. Some anti-euthanasia physicians have affirmed that they will not be participating in the practice while activists have stated that they intend to reverse the law yet again and call for a total ban on assisted suicide.

The Carter v. Canada ruling stated that a physician’s decision to participate in assisted dying was a matter left to his or her own conscience or personal religious beliefs. Abortion services are the same. A medical practitioner cannot be forced to provide a service that contradicts their personal beliefs. When there are no providers, a medical service that is a right guaranteed by law is made difficult if not impossible to obtain. Criminal law is mandated at the federal level and health care is regulated at the provincial level. A province can virtually outlaw euthanasia by making it inaccessible, which can be challenged in court on the grounds that personal Charter rights have been violated.

“There is potential to use the Charter to force a particular province to make assisted death more accessible,” said Begg, but if a physician doesn’t want to see their patients die when they believe there is a chance of saving them, they can’t be forced to.

“I had a patient who chose his date six months out…and he did live that long so he was able to die on the date that he had originally chosen.”

A primary fear is that people with non-debilitating or lethal conditions will give up living if an easy death is a viable alternative.

In Dec. 2012, Belgian twin brothers Marc and Eddy Verbessem died by lethal injection after finding out that they were going blind. Already deaf, they had no means of communicating with anyone but each other and their close family. They had lived together all their lives, and their brother reported that they felt they had nothing left to live for. Knowing that they would never see the other’s face again, they couldn’t bear to go on living.

In a bizarre twist, an amendment was added to the assisted suicide bill just days after their deaths enabling minors and Alzheimer’s patients to receive an assisted death. Despite making their wishes clear, the Verbessem brothers were an unusual exception to Belgium’s laws since they were neither terminally ill nor suffering unbearable physical pain. A case of an able-bodied person with no degenerative disease killing themselves followed by additions that would allow children to die also is the slippery slope that legislators feared when judging Rodriguez v. British Columbia.

Another fear is that the sick or the elderly will feel burdened or be pressured into undergoing euthanasia by their relatives if their medical treatments are costing too much. To prevent abuse of the conditions that allow for assisted suicide, Wiebe assesses her patients before they can receive the lethal treatment.

“Certainly it’s part of our job to assess each patient and be sure that they’re not being pressured. I haven’t seen anything that made me worry,” she said. “Every one of them I am satisfied that we did the right thing and that their choice was a good one.” She consults with her patients, often with their families or support groups present, to discuss their illness and their wishes. She asks her patients about their relationships and monitors how they interact with their family members before making a final judgement. It’s a subtle but obvious way, she said, to be sure that their wishes are entirely their own.

Patients are also required to undergo a 10-day reflection period before euthanasia will be administered. The reflection period was mandated to prevent patients from making hasty decisions after being diagnosed.

“There’s two reasons we’re allowed to shorten up the time from the 10 day reflection period, and those are somebody’s in danger of losing capacity — losing the ability to consent — or in danger of dying in those 10 days,” Wiebe explained. “I’ve had people who are within 24 hours of death, for example, and those have to be done very quickly, and others spend a long time deciding. I had a patient who chose his date six months out… and he did live that long so he was able to die on the date that he had originally chosen.”

Since June 6, Wiebe has consulted with over 100 patients and assisted 40 of them in ending their lives on their own terms. “It is wonderful work. Doctors love having grateful patients and I have the luck of being able to do something that people really appreciate,” she said.

The battle for the right to die has hardly abated. The regulations were written hastily so that they would meet the Supreme Court deadline of June 6, and as a result many Canadians believe the laws to be too restrictive. Safeguards such as the mandatory waiting period ensure that vulnerable people cannot undergo euthanasia before the terms of their illness have been fully processed, and two witnesses are required to attest to their wishes.

“The biggest of the flaws in the Trudeau government’s bill, critics say, is that the Criminal Code only allows assisted death for those who are facing imminent death,” said Begg. Only those suffering from a terminal condition can seek assistance, omitting hundreds of people who are suffering irreparably but not likely to die. People like Kay Carter, who would have lived in agony.

Complete Article HERE!

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Terminally ill Vancouver Island woman thanks Canada for a peaceful death

Noreen Campbell underwent a medical assistance in dying procedure on Thursday.

By Amy Smart

Most of us wonder, every once in a while, when we might die.

Noreen Campbell knew it would be Thursday and it was.

On Monday, she walked from her kitchen into her sun room, which looks onto a rural North Saanich property.

“I’ll go in here,” she said, sitting down in an overstuffed, beige leather chair. Her daughters, Mary and Jane, would be at either side, she said, and her husband, Cliff, would be there, too.

Campbell, 71, could still walk, talk and form coherent thoughts. She wasn’t bound to a hospital bed or so far gone that her family had to wonder about her level of consciousness. But as a registered nurse for 53 years, she had watched many people suffer in their final days and said she had reached her threshold.

“Some people might think I’m too capable, but why should you wait until you have to roll me in?” Campbell said.
“I’m ready.”

Campbell was among the first to receive approval for medical assistance in dying. That was in August, two months after landmark legislation was enacted to allow the procedure in Canada.

She chose to share her story in the hope that it might open the door for others facing death and draw attention to gaps she saw in the process. “I have this feeling that if you’re not part of the solution, you’re part of the problem. With my background, the failure to do something would be negligent,” she said.

“I believe this is the message: To reassure patients and their loved ones that there is an alternative — and give them hope and courage.”

Campbell’s health decline began with a bit of discomfort in 2012. She had a toothache that wouldn’t go away.

“One day, I was sitting and thinking and it was like a smack to the side of the head. I was the educator for the surgical unit that does oral cancer and I thought to myself: ‘What would cause the pain to stay in the same place, be consistent and get worse?’ I asked for a biopsy. And I had very extensive oral cancer,” she said.

“I think it was missed because I’m not a smoker.”

She underwent surgery to remove tissue and bone in her face and jaw, alleviating what had become horrific pain.

About a year after the surgery, she was diagnosed with chronic obstructive pulmonary disease, which is a progressive obstruction of airflow into or out of the lungs.

As a nurse, Campbell had watched many people die. Her worst fear was respiratory disease, she said, having seen, more than once, the extreme suffering of a person who is desperate for air. Faced with the same future, she began planning a trip to Switzerland, where assisted dying is legal.

A Supreme Court of Canada ruling in May 2015 meant she wouldn’t have to make the trip.

The assisted-dying movement largely began in Canada in the 1990s, with Sue Rodriguez, also from North Saanich.

Rodriguez suffered from amyotrophic lateral sclerosis (ALS) and wanted the legal right to end her life with the help of a physician. She lost her legal challenge to the Criminal Code’s prohibition on assisted death, but died in 1994 with assistance from an anonymous physician.

More than 20 years later, in 2015, the Supreme Court unanimously voted to strike down the prohibition and allow medically assisted death. It was legalized with passage of the Medical Assistance in Dying Act on June 17, 2016.

Two days later, Campbell submitted her application.

“I was ready,” she said.

Noreen Campbell underwent a medical assistance in dying procedure Thursday, here she spends time with her horse Dasha in Victoria.

Campbell told her doctor she wanted it as a backup. A respiratory infection could put her in the agony of not being able to breathe and she wanted the power to control her end, if that was the case.

“Simply put, I’d rather end it in two minutes than two days.”

Gradually, her disease progressed to the point where symptom management became a 24/7 job, she said. It had been years since her health began to decline and it became clear that she was dying.

“I think it is this perfect storm. It’s not one symptom, it’s things coming together and they just start to pile up. It’s not just my inability to breathe or my jaw pain. It’s everything. And when you know, ‘This will not get any better’ … there’s a point where you make your decision. And my point was when I was overwhelmed and I felt like I could no longer cope.

“I am dying. I am getting weaker. I can do less, symptom control is overwhelming me. I’m going to die; end of story. And I suddenly get this choice: Do I want to die in less than five minutes? Compared with [experiencing what] the people I’ve witnessed who died over hours and days went through — there is no choice. Otherwise it’s called torture,” she said.

Campbell pressed her finger over her breathing tube each time she spoke, allowing air to pass through her voice box.
Facing death made her reflective, she said.

“We all know we’re going to die, but we don’t have it in our heads. I think, culturally, we have a lot of escapism. When you look at the time before antibiotics, in the 1900s, you were grateful to be alive. But in the 2000s, we’re looking for a way to get out of this life. We have not prolonged healthy living; we have prolonged life by preserving chronic illness.”

After so many years serving at bed sides, she said being in a hospital bed and then as an at-home patient gave her a new perspective on care. Not enough attention is given to a patient’s suffering or quality of life and patients still aren’t provided with all the information they need to make informed decisions, she said.

It begins with doctors talking over a patient’s head — though in her case, she understood what they were saying. And it continues with the difficulty of obtaining information about medical assistance in dying.

Campbell said ambiguity in guidelines from the College of Registered Nurses of B.C., accompanied by recommendations to consult your employer and legal representation, for example, would discourage nurses from communicating with patients about the option unless they ask for it specifically. “I see this as an absolute conflict with suicide-prevention guidelines, which say, if someone walks in and says ‘I can’t go on,’ my question [as a nurse] should be, ‘What’s the matter?’ Not, ‘I can’t talk about that,’ ” Campbell said.

Before Bill C-14 passed into law in June, the federal government added conditions that would exclude many individuals from medical assistance in dying, arguing it needed to protect vulnerable people. It limited the right to mentally competent adults who are suffering unbearably, in an advanced and irreversible decline and whose natural deaths were reasonably foreseeable.

The law has been simultaneously celebrated for opening access, challenged on the basis that it would conflict with medical staff’s freedom of religion and criticized for being too narrow.

Justice Minister Jody Wilson-Raybould has said if assisted-dying was available to anyone suffering from a serious medical condition, then it would be an option for survivors of sexual abuse and soldiers with post-traumatic stress disorder. And the Council of Canadians with Disabilities has said the act needs more restrictions to protect people with new disabilities, who might feel hopeless before they adjust to their new reality.

A 25-year-old woman with spinal muscular atrophy has launched a constitutional challenge, with the B.C. Civil Liberties Association, to expand the right beyond those facing “foreseeable” death.

For Campbell, too, the law doesn’t go far enough. The requirement of “foreseeable death,” doesn’t take into account what can be unbearable suffering from chronic illness.

Suffering, she said, is not always a virtue.

“We should be looking more at what quality of life means to people,” she said.

“I think suffering, pain, does help people mature. That’s the difference between being a kid and an adult. Even if it’s your first broken-heart romance and you see the dud later and think, ‘Thank God,’ there’s a certain amount of pain that’s necessary to make us an understanding society and for people to develop empathy and sympathy. But the idea that suffering is always worthwhile, it’s just beyond me.

“From the time when I was approved, from the time I decided, ‘yes,’ I would say I have experienced the most calm. It’s hard to imagine, but it’s given me a chance to do things,” Campbell said, when asked if she was afraid of death.

She completed a manuscript on wound care, her specialty as a nurse. She became an honorary member of an East Coast chapter of the activist group Raging Grannies (she asked that the story end with “Rage on!”). And she published a video explaining her choice with the advocacy group Dying with Dignity.

She said she didn’t believe in bucket lists — they just cause anxiety. But the knowledge that she would get medical help in dying, when it was time, meant she didn’t have to waste time wondering.

“The other thing we don’t have is a roller-coaster. When you have people who are chronically ill, they’re desperately ill, then recover, then desperately ill, then recover. When you have medical assistance in dying, your focus can be on a comfortable death.”

On Thursday, she went into her sun room and sat down with her family. Her physician gave her a sedative, then via IV, something that would stop her heart. But first she sent the following in an email:

“This is my day — I was able to watch my grandson play hockey, we have had a string of celebrations — tears sure — but so much laughter. Thank you Canadians for making a peaceful death possible for me and sparing my family and friends from witnessing a death with fear and suffering.”

She died at 2:38 p.m.

Complete Article HERE!

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When dying is a choice

By

[I]t was cold but the sun was shining when my father looked out the window and said he wanted to die.

He was lying in a hospital bed, tubes tying him to machines and drips. He was 65, wasn’t a smoker but, like a lot of firefighters, had inhaled things that embedded in his lungs, slowly strangling them. His skin was ashen, his eyes wet and hauntingly sad.

When he said he wanted to die, my immediate reaction was to reassure him, to hold his hand, to tell him that my mother, my brother, my sister, and I didn’t want him to go, that we loved him too much to let him go, that he couldn’t go just yet.

That was 29 years ago, and it took me many years to realize that my reaction to my father’s plaintive, death-bed declaration was selfish, that it was rooted in what I thought was best, what I wanted, not what he thought was best, not what he wanted.

My father lingered for several weeks after he told me he wanted to die, suffering greatly. I have no idea if he would have opted to end his life earlier, to end his suffering earlier, but I wish he had the option.

It would be helpful to know whether a majority of Massachusetts legislators think others should have that option, too, but for the last eight years they have punted on the Death with Dignity Act, bottling it up in committee so that it dies without the dignity of a full and fulsome hearing.

Five years ago, a referendum that would make it legal for physicians to prescribe medications that terminally ill people could use to end their lives was narrowly defeated. But, like all social change, like all civil rights, the right to die with dignity is moving forward, inexorably.

Last month, the Massachusetts Medical Society commissioned a survey of its members’ attitudes toward what they called “medical aid in dying.” For a group that has historically opposed what some call physician-assisted suicide, the mere act of seeking its members’ opinions acknowledges the shift, much of it generational, in thinking.

In October, Dr. Roger Kligler, a retired Falmouth physician with prostate cancer, filed a lawsuit asserting he has a right to obtain a lethal dose of medication from a doctor willing to prescribe it if he becomes terminally ill and chooses to avoid more suffering.

Dr. Kligler rightly believes he’ll get a quicker answer from a court than the Great and General Court. As it has with other highly contentious matters, including same-sex marriage and the legalization of marijuana, the Legislature has been more than happy to let the courts or the public do the heavy lifting.

But even if a court agrees with Dr. Kligler’s argument, the decision could be narrowly tailored to only his case. And as the messy rollout of marijuana legalization has shown, legislating complex matters by referendum often leads to convoluted results.

The Legislature needs to take on Death with Dignity, in all its complexity.

Nine years ago, State Representative Lou Kafka sat down with one of his constituents, a guy from Stoughton named Al Lipkind, who was dying of stomach cancer. Lipkind asked Kafka to file a bill that would make it legal for doctors to write prescriptions for terminally ill people who wanted to avoid needless suffering. Kafka refiles the bill every session. The initial dozen co-sponsors have grown to 40.

“Al was able to make me see it through his eyes,” Kafka told me. “Unless and until it becomes personalized, it’s an issue you don’t necessarily think about.”

Not long after Al Lipkind died in 2009, Kafka watched helplessly as the same disease that slowly and torturously killed my dad did the same to his father.

“I watched him gasp for breath,” Kafka said.

Like me, Lou Kafka doesn’t know if his father would have chosen to end his life before enduring months of agony. Like me, he wishes his dad had the option.

Complete Article HERE!

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A life lesson in the death of a much-loved cat

By Tim Dick

[O]ur household had a late and unwelcome entry in the death toll of 2016. It came with Rocko, who scraped in with a departure on Friday. Granted, the death of a cat is of less moment to most than that of George Michael, and he was a celebrity only to those who knew him, but our wee furry guy managed to give us life lessons without the irritation of a life coach, and company without human complications.

His first life lesson to me was early rising. His day, and therefore mine, began with regularity at 5.30am with a gentle whisker brushed across my face, then the nudge of a cold nose if that didn’t work, then a bite to the nose if all else but mild violence failed to rouse the deliverer of his morning meal.

 


 

Once the irritation has passed that the cat alarm once again chose my side of the bed, and never the other, I was up, fed, and at work before most others, getting my stuff done, and setting up an early exit at the other end of the day. Rocko was a productivity booster devoid of mumbo-jumbo: get up early, do your work, go home.

His second lesson was to demonstrate the benefits of adequate insurance, by having no insurance. Pet insurance might sound faintly ridiculous, but having spent thousands on vet bills in the last two years, and unless you’re able to save for unknown future medical catastrophes, it’s a no-brainer. We’re now breaking even on the insured dog, but were too slow for the cat. It’s compulsory for any future pet.

Rocko the cat

His third lesson was the decision in which he took no part, but which was the right thing to do, and which is the law makes impossible for people: euthanasia.

Nearing Christmas, he became bloated, carrying lymphoma in his gut, heart disease, and a tumour on his liver. We decided to put him down, but delayed it a week or so. He didn’t make it that far, forcing the decision to euthanase after he’d collapsed at home.

I knew something bad was up when, for the first time, he didn’t shred my arms while being shoved in the cat carrier.

As he lay dying on the vet table, our sadness came tinged with relief that the law is gentle enough to allow vets to put down pets when their time has come. His suffering was exceptionally short, his end far more peaceful than we force some people to endure.

After the narrowest of defeats for a euthanasia bill in South Australia in November, the next test of whether politicians will allow people the same mercy as we afford our pets comes in Victoria later this year. The Andrews government said in December it would bring legislation to allow some dying adults to die sooner than they otherwise would.

The right will be restricted to those who have the capacity to make decisions, who are at the end of their lives because of a terminal illness. Two doctors will likely have to approve the prescription of a euthanasia drug, and patients unable to take the tablet themselves could be helped by a doctor.

It strikes the right balance between the right of the dying to avoid unnecessary pain, and protecting others from an unnecessarily hasty death. It merely adds another option for those at the end of their lives, rather than being pumped with morphine to dull the pain of a disease taking its course.

It would end that fake distinction between the legal form of hastening death known as passive euthanasia (like doctors turning off a life-support machine), and the form of hastening death known as active euthanasia (a doctor-provided pill or injection that causes death) which remains illegal across Australia even with the ardent wishes of the patient.

It’s now two days after we put Rocko down, and I am using the home computer without feline keyboard interference for the first time in years. On the screen, which I can see without having to peer around a cat head, is an e-book called Damage Done, a collection of personal essays compiled by Andrew Denton’s advocacy group, Go Gently Australia.

A short way in is an extraordinary death notice, published in The Age last year, which captures the need and urgency for voluntary euthanasia far better than I can. It speaks for itself: “Andrew Ross Carswell, a skilled musician, at times tedious intellectual, much loved friend of many, valued family member, and adored husband to Carolyne, died an unnecessarily protracted, distressing death on Sunday 13 March as a result of the continuing absence of legislation that could have otherwise allowed a man of his integrity experiencing the final stages of liver cancer peaceful, timely access to euthanasia. May he finally be able to enjoy the long sleep he had been anticipating and may the anti-euthanasia lobby collectively experience the tediously prolonged, objectionable demise they are so determined to impose on everyone else.”

Complete Article HERE!

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A Dying Man’s Wish To Donate His Organs Gets Complicated

By Karen Shakerdge

Dave Adox, right, and his husband Danni Michaeli at their home in South Orange, N.J., in the fall of 2014. Adox was diagnosed with ALS at age 42 and became almost totally paralyzed within six months. He died last May.

[A]t 44 years old, Dave Adox was facing the end of his two-year battle with ALS, also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.

He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.

“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. Adox had spent a career with words that now came slowly — he was a freelance reporter, including for public radio, then went on to work in advertising.

“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.

Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, where Adox often had been treated, and have

Family members surround Adox on the day that he died last May. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill.

his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.

In May his family and friends flew in from around the country, and joined neighbors for a big celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”

But their plan suddenly changed when University Hospital’s attorneys intervened.

“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.”

Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted suicide or euthanasia — the key being that the patient is already in the hospital.

But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.

Dr. John Bach, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician, and understood and approved of his patient’s plan to end his life and share his organs.

“I could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,” Bach says. “But he wanted his organs to be used to save other people’s lives!”

Other physicians at the hospital supported Adox’s plan, too.

“We have an ethics committee that approved it 100 percent,” Bach says. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”

Adox before he was diagnosed with ALS. He decided to become an organ donor so that other people could enjoy a longer life.

University Hospital has declined several requests for comment, but Bach says the hospital’s attorneys were concerned about liability.

“The legal issue is: What is euthanasia?” Bach explains. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”

Adox had an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”

Having an advance directive on file is especially important for ALS patients, Bach says, because they can eventually become “locked in,” unable to express their wishes.

“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach says. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”

In this particular case, the hospital wouldn’t have had to rely on the directive, Bach noted: Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient’s wishes could not be met.

“Myself and all the other doctors who took care of him in the hospital were almost as upset about it as he and his husband were,” Bach says.

Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.

Mezrich acknowledges this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.

“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible — keeping them alive no matter what,” Mezrich says. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”

Still, planning one’s death to allow for organ donation raises some thorny questions, says Arthur Caplan, director of the division of medical ethics at New York University and author of Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.

Adox and Michaeli with their son, Orion, in the winter of 2015.

Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan points out.

“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he explains.

This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public discussion because “it’s too controversial.”

“If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan says.

But that approach would have a downside, too, he continues. People might perceive doctors as more focused on “getting organs” than caring for dying patients.

Adox takes one last walk with family and friends in New York’s Central Park before going to a hospital to be disconnected from the ventilator that kept him alive.

There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.

About a year ago there, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.

“Obviously we’re all sensitive to any perception of assisted expedition of death,” says Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”

After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.

In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.

“There was a hospital partner,” Friedman says, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, [and was] prepared to be supportive of what Dave wanted and would be able to provide a bed.”

Finally, on the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.

“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounts, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation they disconnected his breathing machine.”

And in the end, Adox’s wishes were met — he was able to donate his liver and kidneys. Michaeli says he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.

“The person we were trying to do a direct donation for was a match,” Michaeli says. “And he has Dave’s kidney right now.”

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In Colorado, A Low-Price Drug Cocktail Will Tamp Down Cost Of Death With Dignity

The cocktail, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far.

By JoNel Aleccia

As Colorado’s aid-in-dying law takes effect this month, proponents say they’ll make sure terminally-ill patients have access to a new, affordable drug concoction that will avoid the $3,000 cost of a common lethal sedative that has skyrocketed in price.

Officials with Compassion & Choices, an advocacy group, are reaching out to pharmacies statewide to confirm that they’ll stock components of a lethal four-drug cocktail to substitute for secobarbital, known as Seconal, the pricey sleeping pill most often prescribed to induce death.

It’s the second time in a year that right-to-die advocates have come up with a substitute for Seconal after Canadian drugmaker Valeant Pharmaceuticals International Inc. acquired the medication in February 2015 — and abruptly doubled the $1,500 retail price.

“We were looking for something more affordable and available,” said Kat West, an attorney and policy expert with Compassion & Choices.

The new law, which was passed by a two-thirds majority, was signed into law on Dec. 16 by Gov. John Hickenlooper. Colorado joins five other states — Oregon, Washington, Vermont, Montana and California — in which terminally ill patients, usually those expected to live six months or less, can choose to take doctor-prescribed drugs to end their lives. In Oregon, at least 991 patients have died after taking drugs prescribed since the law took effect in 1997. In Washington state, at least 917 have died under terms of the law enacted in 2009.

Access to the medications can depend, in part, on cost. Many health insurance plans pay for aid-in-dying drugs, advocates said, but some don’t, and the medications aren’t covered by federal programs such as Medicare or Catholic-run health care systems. Medicaid programs for the poor and disabled in Oregon and California will pay, but not those in Washington state, Vermont or Montana. In Colorado, it’s still unclear.

That can create a barrier for terminally ill patients who want to use the law, said Beth Glennon, a client-support coordinator for End of Life Washington, an advocacy group.

“The cost does affect people’s decisions,” Glennon said.

As of March, the latest data available, a bottle of 100 capsules of 100-milligram Seconal had a retail price of $3,082, according to data from Truven Health Analytics. Ten grams is a lethal dose.

When Oregon’s law began, the cost was about $150, recalled Dr. David Grube, national medical director for Compassion & Choices and a family doctor who has practiced in the state for nearly 40 years. He calls the price hikes “an almost-evil practice of greed.”

“I think it’s the black side of capitalism,” he said. “It really breaks my heart.”

Valeant officials didn’t respond to requests for comment, but in March firm officials issued a statement saying that secobarbital is approved only for treating short-term insomnia, epilepsy and for use in pre-operative anesthesia.

“If it is being prescribed for off-label uses, it is not something for which the product is manufactured or intended,” the statement said.

To fight the high prices, doctors in Washington state experimented last year with a cheaper mixture that included three drugs — phenobarbital, chloral hydrate and morphine sulfate. The components are widely available and cost about $500 for a lethal dose. But the combination turned out to be too harsh, said Dr. Robert Wood, a volunteer medical adviser for End of Life Washington.

“The chloral hydrate mixture was too caustic for some folks and our volunteers didn’t like using it,” because some patients became distressed, Wood said.

Most doses of lethal medication are bitter, often requiring patients to take anti-nausea drugs. But the new mixture was not only bitter but also caused a burning sensation in the mouths of some patients, said Glennon. “There was some profound burning,” she said. “We didn’t like working with it. As a volunteer, you want to reassure people. We’re about a peaceful, dignified death.”

Wood and his colleagues came up with a new option this summer, a four-drug mixture that includes diazepam, digoxin, morphine and propranolol, known as DDMP. It costs between $300 and $600.

The mixture, which puts patients to sleep and then halts their heartbeat and breathing, has been used 38 times so far, Wood said.

“It is no more difficult than Seconal to ingest and it seems to work quite well,” he added.

The mixture has been used “a fair amount” in California, where an aid-in-dying law took effect in June, said Grube. It’s not yet known how many terminally-ill patients have died under that state’s law, but dozens have requested prescriptions, officials said.

Valeant was widely criticized for raising the price of secobarbital, a popular sedative in the 1960s and 1970s that lost its patent status in the early 1990s. It has been used for aid-in-dying patients since Oregon passed the first U.S. law in 1997, which was modeled on similar action in the Netherlands, where secobarbital was the drug of choice.

Another sedative, pentobarbital, was also frequently used, but supplies in the U.S. became expensive and scarce after European drugmakers objected to its use as an execution drug in death penalty cases.

Doctors and pharmacists are not obligated to participate in aid-in-dying treatment under existing laws, including the Colorado action. In a recent poll, about 40 percent of more than 600 doctors surveyed said they would be willing to prescribe lethal medication, 42 percent said they wouldn’t and 18 percent weren’t sure, noted Dr. Cory Carroll, a solo practice family physician in Fort Collins, Colo., who endorsed the measure.

“The docs that are in opposition have a right to their beliefs, but they don’t have the right to control others,” Carroll said in a recent press conference.

West of Compassion & Choices anticipates that Colorado’s law will be used immediately, as similar laws in other states have been.

“We’re already getting calls from terminally ill people in Colorado who want to access this law,” she said. “I fully expect people to begin requesting prescriptions.”

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